FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.

Insights and experiences on different and new ways to cope with this rare, and often times complex, allergy are shared graciously among the other parents going through this with us. There seems there is always something new to learn, even if you are expected to be a 'seasoned veteran". I remember the seasoned veterans on the babycenter boards when I was first logging in, how much more sure of themselves they seemed. They had learned to trust their instincts, go with their gut, follow their child's lead, learned life outside of the restrictions that FPIES can initially put on your family/lifestyle. Now, armed with the skills and tools needed, they were on to thriving with the new knowledge gained and new perspectives, but graciously continued to come back to the groups to share their insights and experiences, and even their continued frustration of some new challenge that was needing to be overcome. I remember well something a fellow mom had said one day that stuck so well to where I was at the time....give yourself time to process. Allow time to process through the new stages, the new information, the changes that may need to be made in your home or lifestyle. Not in a negative way, but in the 'give yourself time to process' and find your way to thrive scope. Give yourself time. That is what I would add to CradleRocking mama's list. When faced with a new diagnosis of any kind, or any stage in the journey, it is ok to give yourself time to process; allow yourself that.

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Global FPIES Day

The FPIES Foundation

This blog is the sharing of our personal story of FPIES and the specific accounts, details and perspectives about how FPIES affects our Little Man. FPIES is a syndrome and can present with a spectrum of symptoms. A medical team familiar with FPIES can help with the specific needs from symptoms that present in your child. Information shared here does not represent the views of any organization I may work for or be associated with, and should not replace your own instincts or the advice of a doctor knowledgeable in FPIES.

What is FPIES?

In my own words...FPIES is a severe delayed food allergy of the gut, it is understood to be a T-cell mediated response, a Non-IgE Food Allergy in which food is considered a foreign invader and the body fights, or attacks it, until it can violently expel it; although the exact mechanisms are still not well understood.

Symptoms include: profound vomiting (often to bile), diarrhea and/or constipation. These symptoms can quickly lead to: lethargy, low body temperature, low blood pressure and in severe cases, sepsis-like shock. And still yet, many parents report children also experiencing many discomforting symptoms while the body fights this reaction and these can include: extreme stomach pains, excessive gas, runny stools with or without mucus/blood, acid reflux, rashes/eczema, sleep disturbance, and agitation/inconsolable crying.

FPIES is a clinical diagnosis (based on symptoms and history) there is currently no test for it.

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About Me

I am a mom of 4 boys. Our youngest has FPIES. I also work part-time as a Registered Dietetic Technician. Nutrition is my passion, my career, it now envelopes my entire life...
I am taking this one day at a time, putting together pieces of the puzzle for our Little Man's FPIES.
www.thefpiesfoundation.org